Julia Owen, Retinitis Pigmentosa and the Media. Part 3

As a conclusion to this series on Julia Owen, I offer a summary and transcribed excerpts from an audio recording of the BBC TV Nationwide ‘Cause for Concern’ programme, broadcast on 3 January 1979. I am grateful to Roger Halhead for supplying me with an excellent mp3 recording (to replace my decaying audio cassette of a recording in circulation shortly after the programme was transmitted) as well as sharing his reminiscences and research. I am also obliged to Roger for his technical help in transcribing one of the revealing emotional segments in the audio recording.

I fully acknowledge that Copyright for this programme belongs to BBC TV or BBC Nationwide (1979) and I sincerely hope that my use of their material here will be considered “fair dealing” on a matter of public interest, namely the history of alternative treatments for disabilities in the United Kingdom (especially as there seems to be only one full recording of this old TV programme, not at the BBC but in the British National Film Archives – information from Roger Halhead, quoting Steve Bryant).

The title and first few words are missing from Halhead’s mp3 recording. A female announcer (Sue Lawley?) introduces the programme:

“ …. can cure blindness. She charges up to £4,000 but does the cure work?
It’s 6.20 on Wednesday, January the 3rd [1979]. We begin with a story from the world of fringe medicine. Roger Cook reports on a supposed cure for blindness that has not only proved highly expensive to those who’ve taken it but decidedly painful as well.”

The now legendary BBC investigative reporter Roger Cook (still flourishing 32 years later, after a unique career on BBC and ITV – see Wikipedia – in an Emeritus Professor avatar) then skilfully interweaves the stories of three dissatisfied 1978 RP patients and rigorous interviews with medical specialists and a bee venom researcher. He also interviews Julia Owen in her home, giving her the chance she craved to be on prime time TV to explain and justify her work. But the evidence and research are overwhelming and her ranting performance, all too familiar to her bee-stung patients, may have surprised even Roger Cook.

The first disgruntled patient interviewed is John Neil Smith, from Western Australia. His evidence is compelling. (My recent attempt to contact him has not been successful. I hope he sees this blog.)

Roger Cook: “John Neil Smith suffers from Retinitis Pigmentosa, a disease of the eyes that will eventually leave him totally blind. Six months ago, he came to England from Australia to spend his savings on a remarkable cure for blindness. In an Australian newspaper he’d read about a treatment being carried out by a woman in London, a treatment which she claimed had already successfully cured every one of her patients. The woman was called Julia Owen. The treatment involved being stung by bees, day after day for months on end.
…

Cook: “At Bromley in South London, John Neil Smith was installed in this house. Julia Owen has seventeen such properties [to be fair: she rented them or most of them, and never struck me as being particularly rich] in which her patients pay around £60 a week for a room. Once there, John, like all the other patients, was discouraged from going out or even speaking to the neighbours. The next day the agonising treatment began.”
[…]

Cook: “Bees are allowed to sting the patient about the face, neck and hands, ten or twelve of them, one after the other. The stings are then left throbbing in the patient for a further two hours. Just how this affects the eyesight is known only to Julia Owen, a remarkable 70-year old Austrian who has no medical qualifications and is at war with the whole medical profession.”
[…]
Cook: “Mrs Owen claims that the secret of her bees lies in what she feeds them: a cocktail of alcohol and herbs, which she claims affects the bees’ venom and enables her to cure anything from dermatitis to deafness.”

[Patient in background …]
Mrs Owen: “I feed them “fonguy” [fungi]. What “fonguy” I feed them is I use whisky, wine. I use the best – the very best – spirit and I ferment several herbs in it. And when the fermentation come on the top it does come up just like a mushroom, and when is coming a mushroom is a “fonguy”. Then I put it into the extractor and that’s what I put in wid de honey for them to feed.”

Cook: “But by September, John Neil Smith was a very disillusioned man. He’d already paid out £4,000, with no improvement in his sight at all nor, he says, in any of the other patients that he’d met. And there were more shocks in store: Mrs Owen demanded another £3,500 to carry on with the treatment, and much more money to cure a number of other illnesses she’d apparently discovered, including gout and rheumatoid arthritis.”

JNS: “This was news to me, but she had written to my wife giving a terrible picture of me as a possible rheumatic cripple and being useless to myself and everybody else. This terrorising of my wife naturally resulted in great stress for me.”

“One morning Mrs Owen came in, said she had bad news for me and proceeded to tell me that she wanted to cease the treatment because in her words if she continued with the present medication, it “would bust my liver” – to use her words. Then she suggested that I should go home, have a four months rest and then return to begin another course of bee treatment, using different medication and, of course, bringing the three and a half thousand pounds plus money for this rheumatic treatment she’d suggested. The amount for this was unspecified.”

Cook: “So what happened, John, when she suddenly said she was going to discontinue the treatment?”

JNS: “Well, I felt disinclined to come back because I [??] any improvement whatsoever in my eyes and so I asked for a refund of my money for the two month treatment which I had not received. This she emphatically refused and followed up with a stream of abuse in which she said if I didn’t come back, I would be crippled as well as blinded and as I carry my tape recorder around with me as a kind of notebook, I just switched on and recorded this conversation which utterly amazed me.” [Smith’s recording is not easy to follow here but it contains this important evidence.]

Owen: “What the hell is wrong with you, man? [you come all that far for your eyesight…you never get better if you don’t think straight].”
JNS: “I wanted to say that I’ve had four months of my treatment [which leaves the balance of two months].”

Owen: “Yes! If you don’t want to go blind […] trouble. I don’t want to have any arguments with you. You please yourself what you do […] do not stain my character.”
JNS “Mrs Owen, I’m not staining your character.”

Owen [Screaming]: “You DO! […] You are the most stupid man on earth!”
*

The second interviewee was Roger Halhead, who first went to see Mrs Owen in 1976 and finally left in May 1978 for a recommended “rest” for his body to recover from the upheaval caused by the venom “clearing out his system”.

[Background scene: serene Lake Windermere]

Cook: “Another patient of Julia Owen at the time was Roger Halhead, a trainee accountant from Grange-over-Sands in Cumbria. He has Retinitis Pigmentosa and likes to get out into the countryside he loves while he can still see it.”

RH: “In 1973 I was registered partially sighted and told that I had incurable eye disease but
two and a half years ago I heard of Mrs Owen and her bee sting treatment and [that] she offered a cure for Retinitis Pigmentosa so I wrote to her and she rang me up after she received my letter and told me a lot about the people she’d cured and said that she would be able to cure me and that I would be able to return to accountancy which I’d had to give up two years previously because of my failing eyesight.”

Cook: “You mean that she told you she could cure you without even seeing you?”
RH: “Yes. She said on the phone that she would be able to cure me and she hadn’t seen me then.”

Cook: “What happened then?”
RH: “Well, I thought very carefully about it because the treatment is very expensive. She did ask for two and a half thousand pounds at that time. Later we had to pay £3,000. And we decided to go ahead with it because there was nothing else and when you have an eye problem that’s getting worse, then you clutch at anything you can.”

Cook: “So you paid your £3,000 altogether. Did you get receipts?”
RP: “No, we didn’t, never got a receipt for the money and I went to start my treatment in September 1976 and it went on until the end of May 1978.”

Cook: “And, looking back on it, was there – is there- any improvement in your sight?”
RH: “No. There’s no permanent improvement because this September [1978] I went to see an eye specialist and my eyesight’s sufficiently bad to be put on the blind register now.”
*
Cook: “Yes. Roger Halhead and others signed statements which said they’d had remarkable cures, statements that soon found their way into the headlines.”
*
Cook: “But why would you want to do that when there wasn’t really any improvement? I mean, what made you feel you had to?”
RH: “Well, it’s very difficult because this Mrs Owen has a sort of, has a power over you and you feel that if you don’t please her then she’ll send you home. Then you wouldn’t have the treatment so you don’t get the chance. So you want to keep going with the treatment because maybe it’s going to work and you want to have it for as long as you can.”

Cook: “So if these cures are not by and large true, what is it that’s kept everyone from bringing this out in public?”
RH: “Well, mostly fear. Mrs Owen writes letters to them, threatening – well, I can only describe it as a threatening letter I received several weeks ago saying that if my scandalising got back to her, she would then take me to the High Court, and never mind who got busted. So, naturally, people are very frightened to take it out in the open.”

Cook: “We contacted six other people who’ve been patients of Mrs Owen over the past year. Not one of them, has been cured despite her claims of 100% success. Among them was seventeen-year old Maribel Steel, from Melbourne, Australia. She’d been brought over for the bee treatment by her father but he’d had to hurry back home when he heard that his wife was dying. Back in Australia, John Steel [=Brian. the present writer] would get letters from Mrs Owen telling him of Maribel’s fantastic progress.”

[Actor, quoting from a letter from Mrs Owen to Steel]: “She now walks in the street most beautifully and is capable of doing anything and everything without fumbling. She can watch anything and everything on television.”
Steel (by phone from Australia): “Maribel’s letters, which would often arrive the same day, would tell a rather different story, namely that Mrs Owen, every time she came round for the bee treatment, would ask her, ‘Can you see better?’ Maribel would reply, ‘No, Mrs Owen.” Mrs Owen would repeat the question. My daughter would say ‘No’ again, and in the end Mrs Owen would more or less scream it at her, trying to browbeat her, bully her into saying that there was an improvement which didn’t exist.”

Cook: “Why, then, didn’t you challenge Mrs Owen?”
Steel: “Why didn’t I challenge her? There was too much at stake. I obviously hoped for some improvement for my daughter. When you have any sort of hope, when you think that someone might be able to do something, you go all the way to cooperate. You see, the big problem here is that Mrs Owen has tremendous power over her patients. In fact, I don’t think I’ve seen anyone with such power over people – and abusing that power at the same time.”

Cook: “On the 17th of August this year [1978], Maribel was turned out into the streets by Mrs Owen, seventeen years old, practically blind, and all alone, 6,000 miles from home.”
*

Roger Cook follows these accounts with a number of specialist opinions.

Cook: “Stories like these come as no surprise to the medical profession, which has the gravest of suspicions about Mrs Owen and her wonder cure. Among the leading surgeons in the field is John Kelsey, who runs a Retinitis Pigmentosa clinic at Moorfields Eye Hospital [London].”

Kelsey: “It is a gradual, basically a rotting of the eye and eventually the patients will go blind. Um, it is very often, or mostly, inherited, by various ways, and depending on the type of inheritance, the blindness occurs sooner or later. Some will go blind in very early infancy, others will go blind at the age of 70 or 80. The problem is that we know nothing about the base of this condition, and we know no treatment whatsoever.”

Cook: “And what are the secret ingredients of the bee venom which Julia Owen claims does the trick? Biochemists at London’s University College have been analysing bee venom for years and reckon they know pretty well all there is to know about it. Special precautions are taken in the handling of it. Much of what is in it is a natural detergent called melatin, which destroys all human cells. And among other harmful ingredients is apimin, which, if injected in minute quantities, can kill.”

Female Researcher: “A lot of very nasty things are present in bee venom and we know quite a lot about them.”
Cook: “And therefore, presumably, that it’s pretty dangerous stuff to play about with.”
Researcher: “Well, indeed. I would never advocate that anybody was stung by a bee, whether singly and certainly not multiply.”

Cook: “Is there anything to substantiate claims that different kinds of bees, different species, behave in a different way or that by feeding them special things you can make them sting in a special way?”
Researcher: “All I can say about that is that there is no evidence of any change in the composition of bee venom, regardless of where bees come from. They can come from Mexico, or United States, or any part of Europe, and the venoms from these bees, from different species of bees, all seem to contain the same identified components. I believe that the treatment that Julia Owen is using is raising false hopes. She is using this treatment for a condition for which there is no known cure. She is using a treatment which we know to be potentially hazardous from everything we have discovered about the composition of crude bee venom.”
*
Cook: “Julia Owen’s honey bees have certainly become money bees. Every year scores of patients pay several thousand pounds each for the cure.”

Finally, somewhat reminiscent of the inevitable terminal phase of a bullfight, comes the pièce de résistance of Roger Cook’s [December] interview with Mrs Owen.

Mrs Owen: “My life is so wonderful! You fellows never understand it. I curse the doctors day and night because they’re killing me because I can do what they can’t. What I do is out of this world.”

Cook: “Cos it could kill them if they were, couldn’t it?”
Mrs O: “No. Not these bees. They haven’t got any poison in them what could kill you,”

Cook: “You see, we’ve spoken to some people who’ve had your treatment who say they’re not cured.
Mrs O: “Who are they?”

Cook: “There are a number of people. […]”

When Cook offers some names, Mrs Owen launches into a tirade about the detrimental effect of sexual arousal on RP patients’ eyes, prompting Roger Cook’s alert objection:
“But that doesn’t send you blind, though.”
Mrs O: “Pardon. It does send you blind in many cases, many cases. Oh, yes, I know that. That’s the trouble. It’s a much bigger disaster to your eyesight, much bigger strain on it.”

Cook: “But apparently you told him you could cure him before you’d even seen him.”
Mrs O: [interrupting]: “Nobody told him they could cure him. No, no, no. They can make up any story they like. Nobody. If they say that, I want it in writing and I’ve got a wonderful case to bust them wholesale [i.e. for libel]. I’ve no worry.”

Cook: “You had him sign a statement saying that his vision had improved.”
Mrs O: “ No. I never asked him to sign a statement. He wrote it on his own accord. I don’t go on like that, thank you very much.”

Cook: “Are you saying that one of the foremost eye surgeons in the country and the foremost research laboratory, the only research laboratory, almost, in the world, into bee venom, are talking rubbish?”
Mrs O: “Talking bloody rubbish! Absolute rubbish! One hundred per cent, because, look, how are you going to tell me what is in the bee venom when the bee has got such a tiny little bee venom sac?”

[Conclusion by the “prosecution”:]

Roger Cook:
“Well, who do you believe? Julia Owen, with her whisky-drinking bees, or the doctors and the biochemists who’ve spent years researching the subject and say it’s all dangerous nonsense? Course, it wouldn’t be the first time in history that an eccentric has proved the whole medical profession wrong but the results in this case don’t seem to point that way.

“Despite Mrs Owen’s claims of 100% success, not one of her former patients that we contacted had been cured and she seems curiously reluctant to have her claims put to any sort of scientific test. I wonder why. Until she does, the only certain thing is that, one way or another, her patients will go on being well and truly stung,”

The BBC was not taken to the High Court by Mrs Owen. On the contrary, following that devastating investigative documentary on prime time Sunday TV, Julia Owen seems to have slipped instantly into the shadows. Her chauffeur and assistant, Geoffrey Button, is said to have left her employment at that time. Whether Mrs Owen reverted to her less polemical treatment for arthritis and asthma is still unclear but to my knowledge there has been no further news of her treatment of RP sufferers. Most of her prior and subsequent biography (she was born circa 1906) remains shrouded in mystery, awaiting the patience of a future investigator.

Retinitis Pigmentosa Associations in many countries
The U.S. Retinitis Pigmentosa Association was formed in 1971. Information on national RP Associations can be obtained from The Foundation Fighting Blindness. It would seem reasonable to assume that the huge publicity about Julia Owen in the 1970s may have had an influence on the setting up of the UK RP Association in 1975 and the Australian counterpart (in 1979, according to Leighton Boyd, doyen of the Victorian RP Association).
*

One cloud’s silver lining

In spite of enduring over one thousand bee stings from Mrs Owen’s “medicated” bees, as well as five months of her bullying and cajoling, Maribel Steel actually benefited from the ordeal inflicted by her distraught but well-meaning parents because the months spent away from their (our) overprotection enabled her to begin to surmount her extreme disability. Although still no less blind, she has slowly gone from strength to strength and is now revealing parts of her fascinating life journey and is sharing her experiences as a disabled person, on her brand new blog: http://gatewaytoblindness.blogspot.com .
What a daughter! ¡Olé mi niña! And what a mother and grandmother!